Re: CFIDS/FMS = Lyme; high probability

[Guest guest]

Dear Everyone:

At last count there were 13-14 million CFIDS/FMS patients walking around the

US. They are not " properly worked up, " they are hopeless with an illness

that they have been told is without a causation, no hope of a cure/treatment

and are sentenced to a miserable existence. Since my Lyme awakening, I am

surprised that I have never seen a written plan/project in place precisely to

address this matter. This concept is invaluable to the overall Lyme Disease

objective -- plus it is the right and humane mission to pursue. We should

have a clever name for the mission ( " Call for Individual Diagnostics " -

CFIDS, Lyme Blitz, etc.). Any ideas? This is probably the easiest thing to

do (if you have patience, LOL!) with an almost immediate pay-back benefit.

To-date I have " converted " 34 CFIDS/FMS patients to Lyme (histories, testing

and diagnosis completed) in southern California. It has been time consuming,

but rewarding. In time, the 34 patients will multiply by 4 or 5 and then

there will be 170 patients; this is a mushrooming process. This is a numbers

game, once the momentum is in place, the mission takes care of itself.

IN NUMBERS WE WILL HAVE POWER!

Whatever you end up doing, please keep the above in mind. Personally, I

could never associate with CFIDS/FMS patients again, without this burning in

the forefront of my thoughts. I have also had to learn the painful lesson of

letting go, some of these CFIDS/FMS patients WANT to be LIFERS, they don't

want another diagnosis, EVEN if they could get better! It is painful to have

to walk away! You can lead a horse to H2O, but....

Haggered Annie from Los Angeles

_____________________________________________________________________

Subj: Lyme Disease added to (CFIDS/FMS) Suncoast Support Network focus

Date: 1/22/00 9:34:20 AM Pacific Standard Time

----- Original Message -----

From: Marilyn K <MarilynK@...>

____________________________________________________________________

>

> This announcement may be copied and distributed only in its entirety.

>

> ANNOUNCEMENT

>

> The Suncoast CFS/FMS/MCS/GWS Support Network has added Lyme Disease to its

> name and to its focus.

>

> We have made this change because, even in this supposedly low-risk area,

all

> of the local patients tested in their Ampligen workup to rule out Lyme

> Disease were found to have Lyme Disease based on the LUAT test.

> Additionally, not all of those positive have migrated from high risk

areas.

> (Risk areas information can be found at

> http://www.geocities.com/HotSprings/Spa/6772/lyme.html)

>

> (The LUAT test is performed by Igenex (http://www.igenex.com. This URL is

> provided for informational purposes only and should not be considered as

an

> advertisement or endorsement or their products or tests.)

>

> Additionally, this makes the Suncoast Support Network one of the few

support

> groups for Lyme Disease in Florida.

>

> In my recent literature searches, it appears that if a person tests

> positive, Lyme Disease could be the cause of some or all of the CFS/FMS

> symptoms or is, at least, a perpetuating factor for those symptoms.

>

> I have started adding Lyme Disease information to my website at

> http://www.geocities.com/HotSprings/6028/ or its mirror site at

> http://www.geocities.com/marilynk.geo

>

> I hope that CFS/FMS patients consider being tested for Lyme Disease and

find

> the information provided at my website helpful in making such a decision.

>

> Suncoast CFS/FMS/MCS/GWS/Lyme Support Network meeting information:

> First Sunday of every month, 2-4PM, 702 S. Kings Ave., , FL

> Third Sunday of every month, 2-4PM, University Community Hospital

> Auditorium, Fletcher Ave. and Bruce B. Downs Blvd., Tampa, FL

>

> Information on upcoming speakers can be found at the Suncoast Support

> Network Home Page at

> http://www.geocities.com/marilynk.geo/suncoast.htm

>

> Marilyn Kerr RN

> Pres., Suncoast Support Network

>

[Guest guest]

Dear Everyone:

At last count there were 13-14 million CFIDS/FMS patients walking around the

US. They are not " properly worked up, " they are hopeless with an illness

that they have been told is without a causation, no hope of a cure/treatment

and are sentenced to a miserable existence. Since my Lyme awakening, I am

surprised that I have never seen a written plan/project in place precisely to

address this matter. This concept is invaluable to the overall Lyme Disease

objective -- plus it is the right and humane mission to pursue. We should

have a clever name for the mission ( " Call for Individual Diagnostics " -

CFIDS, Lyme Blitz, etc.). Any ideas? This is probably the easiest thing to

do (if you have patience, LOL!) with an almost immediate pay-back benefit.

To-date I have " converted " 34 CFIDS/FMS patients to Lyme (histories, testing

and diagnosis completed) in southern California. It has been time consuming,

but rewarding. In time, the 34 patients will multiply by 4 or 5 and then

there will be 170 patients; this is a mushrooming process. This is a numbers

game, once the momentum is in place, the mission takes care of itself.

IN NUMBERS WE WILL HAVE POWER!

Whatever you end up doing, please keep the above in mind. Personally, I

could never associate with CFIDS/FMS patients again, without this burning in

the forefront of my thoughts. I have also had to learn the painful lesson of

letting go, some of these CFIDS/FMS patients WANT to be LIFERS, they don't

want another diagnosis, EVEN if they could get better! It is painful to have

to walk away! You can lead a horse to H2O, but....

Haggered Annie from Los Angeles

_____________________________________________________________________

Subj: Lyme Disease added to (CFIDS/FMS) Suncoast Support Network focus

Date: 1/22/00 9:34:20 AM Pacific Standard Time

----- Original Message -----

From: Marilyn K <MarilynK@...>

____________________________________________________________________

>

> This announcement may be copied and distributed only in its entirety.

>

> ANNOUNCEMENT

>

> The Suncoast CFS/FMS/MCS/GWS Support Network has added Lyme Disease to its

> name and to its focus.

>

> We have made this change because, even in this supposedly low-risk area,

all

> of the local patients tested in their Ampligen workup to rule out Lyme

> Disease were found to have Lyme Disease based on the LUAT test.

> Additionally, not all of those positive have migrated from high risk

areas.

> (Risk areas information can be found at

> http://www.geocities.com/HotSprings/Spa/6772/lyme.html)

>

> (The LUAT test is performed by Igenex (http://www.igenex.com. This URL is

> provided for informational purposes only and should not be considered as

an

> advertisement or endorsement or their products or tests.)

>

> Additionally, this makes the Suncoast Support Network one of the few

support

> groups for Lyme Disease in Florida.

>

> In my recent literature searches, it appears that if a person tests

> positive, Lyme Disease could be the cause of some or all of the CFS/FMS

> symptoms or is, at least, a perpetuating factor for those symptoms.

>

> I have started adding Lyme Disease information to my website at

> http://www.geocities.com/HotSprings/6028/ or its mirror site at

> http://www.geocities.com/marilynk.geo

>

> I hope that CFS/FMS patients consider being tested for Lyme Disease and

find

> the information provided at my website helpful in making such a decision.

>

> Suncoast CFS/FMS/MCS/GWS/Lyme Support Network meeting information:

> First Sunday of every month, 2-4PM, 702 S. Kings Ave., , FL

> Third Sunday of every month, 2-4PM, University Community Hospital

> Auditorium, Fletcher Ave. and Bruce B. Downs Blvd., Tampa, FL

>

> Information on upcoming speakers can be found at the Suncoast Support

> Network Home Page at

> http://www.geocities.com/marilynk.geo/suncoast.htm

>

> Marilyn Kerr RN

> Pres., Suncoast Support Network

>

[Guest guest]

since this is mentions your state thought you needed to keep this too. hope

you had a good flight.

[Guest guest]

In a message dated 5/3/00 11:55:35 AM Eastern Daylight Time,

InformationJunki@... writes:

<< ome of these CFIDS/FMS patients WANT to be LIFERS, they don't

want another diagnosis, EVEN if they could get better! It is painful to

have

to walk away! You can lead a horse to H2O, but....

>>

I disagree with you strongly. That is downright insulting!!

elizabeth

[Guest guest]

Dear beth:

I apologize for you feeling insulted, that was not my intent. I believe what

I wrote and I stand behind my " opinion. " This has been my experience with

several people that I have interfaced with. I believe that this is a

manifestation of fear, denial, fear, not wanting to upset the apple cart and

fear again. Change can be an impossible obstacle to overcome. Resistance to

change has changed the course of history, time and time again. I can say

this, having lived it. That was me 100%. This is verifiable via several

people, names that I would forward privately, if needed. I do not think that

I was so unique in my " conversion process. " I even went through an instant

replay, when I started getting a feeling about my child. You don't even want

to hear about 's rebellion!

I am very impassioned about this situation. I'm certain that I'm coming from

the same place you are -- education, acceptance, cure, treatment, funding, a

halt to this ongoing travesty, etc. Maybe you just need to forgive for the

choice of words.

Sincerely,

Annie

[Guest guest]

In a message dated 5/3/00 4:18:41 PM Eastern Daylight Time,

InformationJunki@... writes:

<< I believe what

I wrote and I stand behind my " opinion. " This has been my experience with

several people that I have interfaced with. I believe that this >>

annie,

There is always a very small percentage of people who, due to their

psychological needs, who are content with their diseases and not seek

treatment. That is found in all diseases and it is not fair to pinpoint it on

cfs/fms alone. These small percentage is not a true reflection of the cfs/fms

population.

elizabeth

[Guest guest]

Dear Annie (and Everyone),

I owe my health, life, career, and entire future to the Lyme Literate

person who reached out to me and suggested I disregard this CFIDS

" diagnosis " and pursue the possibility of Lyme. I am grateful beyond

words to anyone bringing Lyme awareness to the CFIDS community. Without

that one person who contacted me after seeing my posts and believing I

really had Lyme, I would be living an entirely different and infinitely

worse life.

I have been in the CFIDS community for 6 year. Annie, I certainly won't

dispute any expriences you've had; but I've been witness to an outreach

effort on the part of Lyme Literate people in the internet support/news

group for CFS which I belong to. Of the hundreds on the List, I can't

think of a single voice that said they're not looking for a cure or a

treatment. In fact, there was a clamoring for info on how to get

diagnosed for Lyme. That is how I even learned about getting myself to an

LLMD. Many people were disappointed when Western Blot tests came back

negative. There were others who couldn't afford to get tested or couldn't

get a doctor to test them, and didn't have the resources to go to a

different city or state.

Please be cautious about characterizing anyone in the CFIDS community as

accepting their illness to the degree that they won't seek treatment. I

never felt that way, and in 6 years, I've never met another CFIDSer who

felt that way. Even if they didn't pursue the course of action you

recommended to them, I'm almost positive they remembered the possibility

of Lyme and will remember it as something to pursue when they have the

resources or can find a doc who believes the symptoms they report.

Thanks -

Marie (who is prfoundly grateful for every effort made by people

informing the community ab. Lyme)

[Guest guest]

Hi Annie,

I wish to apologize for my initial response which was somewhat strong. I was

not feeling well yesterday after weathering a rough day the day before and

when I saw thses particular comments, I felt that cfs/fms community was being

attacked and I took that very personally. I am sorry I wasn't able to tone

down the intensity of my original response and hope you will accept my

apology. The CFS/FMS community has been a tremendous help when I joined that

group four years ago. I am still involved with them due to long friendships

generated over the years and sharing my experiences. In fact, often in chat

rooms, we talk about lyme disease and antibiotics. At least four chat leaders

have been diagnosed with lyme not too long ago. It would be fair to say that

the chatrooms are more like CFIDS/FMS/Lyme rooms.

I am glad that more of us who benefit from being part of the lyme disease

community and our antibiotical treatments helping us, are spreading the words

to the CFIDS/FMS community and giving them hope. This is the first serious

workable treatment that we have ever seen from the beginning. There has been

a lot of transtitions from CFIDS/FMS community to lyme disease community and

it will continue.

It may be a good idea for us former CFIDERS and interested lymies to mobilize

and set up a concrete plan to keep sending the words to the cfids/fms

community, and share with them the progress made by lymies formerly diagnosed

with that garbage-labelled disease. Those who contact us for more

information, we can guide them through the maze of finding a LLMD, the

mysterious ways the antibiotics work and the dreaded herxheimer reactions.

Why don't we get together and work on this?.. In fact, now that you brought

this up, I wonder why there isn't more aggressive education. By individuals,

we do the work, but it progresses slowly.. If we set up a website where it

can be accessed by thousands, the work will be speedier. The websites can

have more personal stories of those formerly diagnosed with cfids/fms. I am

a computer semi-literate.. maybe someone here is handy with setting up

websites.. We can ask those with lyme websites to carry the link to the

'formerly cfidsers who are now lymies' site.

Welcome to this group, Annie. Likewise, I am strongly impassionate over the

continuing misdiagnoses of lyme disease. I lost unbelievably lot in the years

before I got the right treatment and feel a lot of anger toward doctors who

ignored my insistence that it is lyme disease basically because of their

ignorant reliance on inaccurate tests. They ignored my scientific training

(which unfortunately I remember very little now due to neurological and

cognitive problems) and biomedical research experience. I cannot forgive them

their arrogance. I was right the first year and if I got the right treatment

by then, who knows where I will be now!!!

Please excuse me for my strong reaction yesterday.

sincerely,

elizabeth

In a message dated 5/3/00 11:55:35 AM Eastern Daylight Time,

InformationJunki@... writes:

<< I am

surprised that I have never seen a written plan/project in place precisely

to

address this matter. This concept is invaluable to the overall Lyme Disease

objective -- plus it is the right and humane mission to pursue. We should

have a clever name for the mission ( " Call for Individual Diagnostics " -

CFIDS, Lyme Blitz, etc.). Any ideas? This is probably the easiest thing to

do (if you have patience, LOL!) with an almost immediate pay-back benefit.

To-date I have " converted " 34 CFIDS/FMS patients to Lyme (histories, testing

and diagnosis completed) in southern California. It has been time

consuming,

but rewarding. In time, the 34 patients will multiply by 4 or 5 and then

there will be 170 patients; this is a mushrooming process. This is a

numbers

game, once the momentum is in place, the mission takes care of itself.

>>